Not Down Or Out

It could be worse. I might not be laughing.

Month: February, 2012

Cancer Buddy Reunion

Today I returned to the hospital for a check-up. I woke at five in the morning because you have to get to the hospital early to get a parking space. I ended up pulling into several before I found one wide enough to allow me to open a car door to get out. Does everyone have to drive a car big enough for a soccer team’s travels?

Once I entered the hospital I felt like I had come “home.” The crowds of patients that assemble before the elevators “open” at 7 a.m. had just finished boarding elevators. I had to wait for an elevator. I rode it down to the basement level and walked slowly toward the cafeteria. My appointment was not scheduled until 9:45 a.m. I had time to waste. I stopped in at the women’s room, but it already was a mess. I decided that I could hang on a little longer.

The cafeteria was populated with doctors in scrubs and those yellow gauze apron/gowns they wear in sterile environments and then outside of them. Three female doctors sat at the closest table talking about an older surgeon who could not resist flirting with younger female doctors and residents. “He’s old enough to be my father,” one doctor proclaimed. Another responded, “Agewise, but not emotionally. He still confuses mandatory flattery with actual admiration.” Three women laughed.

At a nearby table three male surgeons sat together discussing a procedure already performed that morning. As they rose to take their breakfast trays to the conveyor belt that would carry dishes to the dishwasher, they spared one look for the three female surgeons. The women observed this with an eyebrow raised in unison. “Orthopds,” one said dismissively. “I like your new clogs,” continued another.

I finished my cherry yogurt and decided to take a tour of the hospital’s many women’s rooms. It took me about twenty minutes to find a relatively clean one. Then I headed for the elevator to take it to the second floor–Clinic H. I held the doors open for a nurse dragging a little suitcase and assorted patients. All of us exited on the second floor.

It was about eight in the morning. My appointment was for 9:45 a.m. The receptionists for Clinic H have stations along a U-shaped desk. Patients stand at a distance in a line. We have been issued a sheet of paper with our appointments listed upon them. We get called up to the desk. We present identification and any insurance information. The receptionist was handling another patient while I waited in line. She told the woman that we had to be there one hour before our appointments but could not check in more than one hour before an appointment. The other patient spoke Spanish and was confused.

I left the line to take a seat and wait. I knew that, by the time it was 8:45 a.m., the room would be packed and it would be difficult to get to the desk. “Where are you going?” the receptionist asked.

“I’m 9:45,” I answered.

She went back to typing. Nevertheless, ten minutes later she called both of us to the desk and checked us in before our allotted times. Rules are made to be broken by the people who make them.

The room started to get crowded. The hospital was closed for President’s Day to save the county money. As a result, last Monday’s patients were scheduled for this Monday. The patients were an interesting lot. Today the room was Hispanic. About 50% of the patients had last names like Sanchez or Vazquez. Only one receptionist spoke Spanish. As a result, names were called in a manner that bore no relationship to correct pronunciation. My name can be read phonetically but was called out as “Chell Kale.” I did not answer for some time until I heard “Cheryl.”

There were about five Asian gentlemen, no Asian women. Demographically, the Asian men were older than anyone else in the crowd. They wore white athletic shoes and several had Bluetooth devices hanging over the top of one ear. They were whisker thin and dressed head-to-ankles in beiges and browns, as if they had received the same instructions that morning.

There were four Polish or Eastern European patients, all women accompanied by male companions. One man with dark hair and a dark beard stalked back and forth through the room, all the time talking on his cell phone in his native language. The women were soft-spoken and had pretty names like Irina.

The rest of the room was African American or Caribbean. There was one woman with scarlet hair twisted in tiny tufts like skeins of starched embroidery floss. The color stood out against her tan coat, scarf and fedora. I could not stop staring at this exotic bird’s feathers. It reminded me of Barb’s statement that every afghan included a scary color. This woman’s hair was Kool-Aid red. But she was no Easter chick with a Rit dye job. She was my age. The color of her hair was vulgar, yet arresting.

The same nurse who rode in the elevator with me came out to collect me and took me back to test my vitals. I returned to the waiting area, which had grown more crowded during my absence.  As I waited, a tall, African American woman with newly growing hair and a white, down coat joined the line. I waved to her. It was Wanda, a cancer buddy I met on my first day of chemotherapy.

We hugged. She continued chemotherapy and radiation after I finished because she skipped several treatments for dental problems and because she was tired. Like me, Wanda had uterine cancer. She has the same doctor. She has already suffered a relapse. She told me that, like me, she has declined internal radiation. They wanted to treat her rectum. I told her that I had so far declined internal vaginal radiation. I told her about my week in the hospital back in December. She was shocked to hear that the hospital had not supplied me with toilet paper for two days during my hospitalization. Then we hugged again.

I have missed my cancer buddies. As much as I lean on my family and friends, there are things other cancer patients understand without your having to say anything at all. The price to join the club is so steep. Once you have paid it you know how scaary it is to have a disease that people undergo cancer treatment to avoid. The cancer treatment makes the worst case scenario seem more terrifying than The Exorcist. Imagine being possessed by a demon that can waste you away. There were women in the waiting area today that were skeletally thin. There was a woman in a wheel chair whose shiny white head and face were luminous. I felt as if I sat beside a creature no longer of this world–a human version of the lightning bug. She had one foot in heaven, one still here in hell.

Many of the women left their wigs, if they owned them, at home. Some of the wigs worn were a little scary. One had been curled with a curling iron. It reminded me of a head topped with red checkmarks.  Another was stiff with sweat or product. It stuck out from beneath a bedazzled cap like the Lorax’s moustache. My eyes kept returning to the scarlet-dyed locks of  the woman across the room.

When my name was called again I followed my nurse back to the consultation area. Dr. H’s trainees awaited me. Dr. Z disappeared. I took a seat and waited while the junior doctor or resident (her name remains a mystery) reviewed my test results and inquired about my condition. It was after 11:00 a.m. Dr. H was still with another patient.

The doctor was much chattier without her colleagues. We discussed my bladder, my bowel, my shoes, my exercise plans, and everything else on my list of concerns. She printed a copy of my cytoscopy results for me. When she had everything ready for Dr. H, the junior doctor left the room.

Dr. H joined us about five minutes later. We all gathered to run down my list. The written report from the urologist said that he could not rule out acute radiation cystitis. I volunteered that I was not inclined to seek internal radiation in light of my bladder’s condition. Dr. H agreed that there was no point in further burning my bladder. I asked about the hyperbaric chamber. My friend Mary researched it and found that it has worked in 68% of cases of cystitis like mine. I know, it sounds very Michael Jackson to climb into a tube a little bigger than a hot water heater and let them pressurize it. The oxygen fills your blood and repairs the cells of the bladder. I found a lab near my home that sells packages of 40 sessions for about $1400.

Dr. H called some people to ask them if they thought it might work as she had no experience with it. I have to wait for them to return her calls to hear their assessments and her advice.

Dr. H asked me if the pain was all that bad. I showed her the notebook I keep in my bathroom. Every day I write in it how many times I am there and I rate the pain. More than 50% of my twenty-four visits per day are rated as nines on a scale of ten. Ibuprofen is not a source of relief for such episodic pain.

We discussed my other complaints and concerns. The doctor ordered blood tests and scheduled me for another check-up for a month from now.

In the Infusion Clinic, Clinic J, I saw the phlebotomist and two of my chemotherapy nurses. It felt good to see them without the prospect of another round of chemotherapy.

As I left the hospital I walked a little straighter. My knees are still killing me. My bladder and bowel are fried. I remain fatigued. But I have put some things behind me. I may be haunted at times by the prospect of cancer returning, but no ghosts followed me as I walked the hospital’s floors. I did not hear any news of cancer buddies having lost their battles. There will come a time when every test makes me fearful of a relapse. I may yet feel pressure to undergo that internal radiation. For now, I am content to see a cancer buddy and learn that she is hanging in there. I am relieved to see my medical team without having to undergo anything more stressful than a blood test. When I close my eyes in a few minutes and try to go to sleep, I intend to begin by counting my blessings. Sweet dreams, folks. I’m going to pray for sweet dreams.

Scary Afghans

Barb is my most amusing muse and such a dear friend. Tonight we finally celebrated her birthday–more than a month late. It has taken me more than a month to be well enough and for her to be available to celebrate.

My best punch lines are her inspiration. She visited me while I recuperated from radiation and chemotherapy at my mom’s house. I was lying on the den sofa beneath an afghan that was my Grandma F’s. It was in that wavy pattern we used to see after TV went off at night (a far better thing than the all-night infomercial). I felt awful. At the time, I experienced terrible spasms in my urethra throughout the day. I cried freely when these spasms began. In between bouts of this agony I woiuld struggle to focus on my work, my recovery, and my life. Barb came during this time to cheer me up. And she did.

She looked at me, wrapped in my grandma’s afghan with its pink, brown, maroon and fire engine red stripes and said, “Have you ever noticed that every afghan contains at least one scary color?” She shuddered as she pointed to the red stripe.

Barb holds unique views on many aspects of normal life. I will relay more of them in less direct attributions in this blog so that she will continue to share her views with me freely. Barb also is the person who first came to visit me in the hospital when my cancer nightmare began. She is the person who came back when I struggled with recovery. She took me to doctor’s appointments and cried with me when Dr. H told me that I had a 95% or better chance of being alive in five years, rather then the 40% or better chance we had been expecting. She has accompanied me to chemotherapy, radiation, and the dreaded bladder examination.

These days she is opening medical bills and preparing a spreadsheet of expenses to help me assess the “damage” done to my finances by surgery, chemotherapy, radiation, another hospitalization, and other medical treatments.

She calls me nearly every day to share her life. During these past months when I struggled with cancer and its aftermath, she lost her mother and has been settling her mother’s estate. Barb has a narrow frame, but manages to shoulder more than anyone I know.

There are times when the best friend you will ever have can do nothing except listen. I am grateful that Barb will answer the phone when I have worn out my welcome elsewhere. One of her personality traits is that she has mastered the answering of a question with a question. This has been very helpful during appointments with doctors.

Barb is also tough. I recall the time my law firm gave me tickets to a concert at the United Center. Barb and I were in the law firm’s skybox with the daughter of a client. The other woman and her friend were rude. They drank too much and insisted upon singing aloud along with the main act. Barb leaned past me and cast several nasty looks at the other women. Even though I said nothing, the women decided they would rather pick  a fight with me than Barb. The four of us ended up facing off in the women’s restroom. Barb jumped in front of me when it was clear I was the other women’s preferred punching bag. Barb will take on a battle when I would be inclined to walk away. I am not saying I could not have squashed the other two women by sitting on them, but it’s nice to have a friend who would take a punch for you.

Barb once went on a cruise with me and my niece Maureen (my friend Cindy also has shown that kind of bravery). Maureen grew tired of stupid old Aunt Cheryl during that two week plus extra days cruise. But she was happy to tell Barb all about it as soon as I fell asleep. Barb was very patient, telling me only that I should stay awake to hear “Gabigail’s” reports of my early onset dementia. I did not need to do this as Maureen had been leaving out her open journal in which she kept writing: “Aunt Cheryl seems to be having PMS–again!” (In case you’re wondering, Maureen and I have made up after our past squabbles. Indeed, she and her fiance Jutstin came all the way out to Chicago to take me to chemotherapy and radiation after Thanksgiving.)   Barb remained my friend even though Maureen tried her patience. She did manage to get a little “revenge” when we were in a cab for a tour of the island of Mallorca. As we drove along a scenic road at the edge of the island’s cliffs overlooking the sea, Barb whispered to Maureen, “This is the kind of place tourists get robbed and thrown over the cliffs.” Poor Maureen. She blanched at the idea of it. Barb has a wicked sense of humor.

That sense of humor is to be respected–and feared. I will confess that I sometimes fear that Barb will sign me up for a makeover by some show like What Not To Wear. Barb watches all of the style shows. I don’t. Lately my clothing style has been clothes too large or purchased in another decade. It is a credit to Barb that I have yet to appear on such a show. The temptation must be overwhelming at times. My friend Paul keeps hinting he will sign me up for Hoarders even though I have never collected tinfoil, old newspapers, or empty cans. I am an easy target even if most of what I collect are books.

Okay, if Barb is eccentric, then I am more so. It must help to explain why we have  been such good friends for so long. It may explain my relationships with all of my friends!

Barb doesn’t require of her friends devotion to her every whim . Barb loves opera, but she has not suggested that I join her since we saw Amistad together. I wept openly from boredom. She loves running and other exercises and has never been anything but encouraging when I exercise. My exercising is never “pretty.” Indeed, after I spent an entire summer riding a bike, fellow riders would call out to me, “The first day is always the hardest!”

It’s not wise to expect any person to be all you need in life, but it is a wonderful thing to have a friend who embraces your differences as well as your similarities. It makes me wonder why more of us don’t adopt the same strategy at work, in families, or in marriage.

Happy Belated Birthday, Barb. Thanks for being there when I need you–even if it means you have to face my family’s scary afghans!

Mystical Music/Paper Accomplishments

In response to my last posting, I have been the beneficiary of many prayers. I am grateful for these invitations of positive results on my behalf. My sister has had dozens of family and friends praying for me over these past months. My mom’s friends have all been praying with her for me. She gave me a perpetual prayer offering performed by nuns. My former boss and colleague, his wife and their prayer group have been praying for me. My many friends have dropped their tasks to pray for me on days when I needed help to get through some difficult task or test. Millie, a former student, has offered her own prayers and sent me some prayerbooks that I have employed on my own behalf. Gita, a former student plans to add me to her prayer ministry’s list. My cousin Alice has begun collecting verses for a song of prayer to the tune of the spiritual tune “Jacob’s Ladder” and has picked up a ukulele to use as she prays it.

One of my favorite books is Thomas Moore’s Care of the Soul (Harper Perennial 1994). On its cover, he describes it as “a guide for cultivating depth and sacredness in everyday life.” In it, he discusses that: “‘Soul’ is not a thing, but a quality or a dimension of experiencing life and ourselves. It has to do with depth, value, relatedness, heart, and personal substance.” Id. at 5.

He is a psychotherapist who acknowledges that care of his patients sometimes calls for him to stay his hand rather than take pain away “in the name of health.” Id. Sometimes the condition a patient wishes to end has the capacity for enriching the patient’s life. In particular, he discusses a person who seeks to cut away her dependency upon others because she views it as disempowering. Moore asks whether it might be better to find a way to live with dependency as it also means relatedness: “Don’t you want to be attached to people, learn from them, get close, rely on friendship, get advice from someone you respect, be part of a community where people need each other, find intimacy with someone that is so delicious you can’t live without it?” Id. at 7.

I often go it alone. I like my independence.

I have, these past months, wallowed in a deep pool of community with others. It has been delicious. By opening doors and windows and letting light shine in on my situation, I have seen in that pool’s remarkable depths new lessons for living my life. Moore discusses the value of respecting that which we dislike in ourselves.

My naturapath has offered me various homeopathic remedies for the physical effects of my cancer treatment. Already I can see some small, but encouraging changes in my bodily functions. Moore honors homeopathy in his discussion of healing the soul:

The basic intention in any caring, physical or psychological, is to alleviate suffering. But in relation to the symptom itself, observance means first of all listening and looking carefully at what is being revealed in the suffering. An intent to heal can get in the way of seeing. By doing less, more is accomplished. Observance is homeopathic in its workings rather than allopathic, in the paradoxical way that it befriends a problem rather than making an enemy of it.

Id. at 10.

Moore points to the religious practice of cleansing or sprinkling with water before religious service and notes that we also might benefit from releasing ourselves from “well-intentioned heroism” before we seek to help others. Id.

Perhaps there are several messages in these images of prayer, music, water, and healing. If the fight to eradicate cancer is undertaken in a manner that scorches all that surrounds it, then it may not be healing. Before deciding how to go forward, it may help to cleanse or detoxify with water and other remedies that heal by befriending that which is perceived as the source of imbalance. The value of music and prayer being married for the purpose of healing is as old as time.  Moore comments: “Imagine a medical approach more in tune with art, one that is interested in the symbolic and poetic suggestiveness of a disease or a malfunctioning organ.” Id. at 155. Moore acknowledges we do not have a ready tool for divining the symbolic meaning of every organ or our “body imagery.” Id. at 161. However, he recognizes that music may bridge the gap between the mystery in illness and its healing. Quoting, Moore writes: “Novalis said, ‘Every disease is a musical problem. Its cure, a musical solution. The more rapid and complete the solution, the greater the musical talent of the doctor.'” Id. at 170.

Moore wonders aloud whether illness is a sign of battle between our bodies and something else in our existence. He asks whether it might not be possible to learn something from illness rather than merely focusing on overcoming it.

We could find new, deep value in illness, without masochistically indulging in it. We could risk the battle. In our psychological lives, too, we could hold off our palliatives and our techniques for relieving suffering long enough to find the [mythological] god who has been struck and to reestablish harmony in our relation to that god. Illness offers us a path into the kind of of religion that rises directly from participation in the deepest levels of fate and existence. . . . In a very real sense, we do not cure diseases, they cure us, by restoring our religious participation in life. If the gods appear in our diseases, it follows that our lives may be too secular and in need of such a visitation.

Id. at 167-68.

I find most compelling Moore’s comment on cancer:

Sardello looks at imagery in cancer and concludes that its message is that we live in a world where things have lost their body and therefore their individuality. Our response to this disease could be to abandon the mass culture of plastic reproductions and recover a sensitivity to things of quality and imagination. If we attack nature with our polluting methods of manufacturing, and if we let the quality of life fade in the name of speed and efficiency, then symptoms may arise. In Sardello’s description of disease, our bodies reflect or participate in the world’s body, so that if we harm that outer body, our own bodies will feel the effects. Essentially there is no distinction between the world’s body and the human body.

Id. at 171.

I am only starting to think through the ways in which my cousin Alice’s ukulele and prayer may help me recover from the current situation in which I find myself. I was diagnosed with cancer. Like most people, I sought medical assistance. I had the cancer cut from me within days. I went through weeks of chemotherapy and radiation that attacked healthy and unhealthy cells with extreme toxicity, leaving behind a wasteland that still has me shedding hair, bleeding from three orifices, and, most distressingly at this time, crying in bathrooms at least two dozen times a day. What else are the toxic treatments doing to my body? If cancer is a sign of disharmony that has caused a mythological god to visit me to draw attention to that disharmony, what have I done to address the disharmony, to befriend my cancer for the purpose of finding what it represents and repairing that condition by repairing something else in my life? If medicine and music have at their core an understanding that life and art have tonalities and harmonies that improve each, have I listened for the dissonance that my ill-health represents? Now that I am undertaking homeopathic remedies, am I drawing closer to remedying not only what is at odds with my body but also my soul?

Already cancer has made me a better person. I have learned so much from others with cancer that I feel enriched even as the cancer has depleted me. Catherine Ingram wrote in Passionate Presence (Gotham Books 2003):

What is known as realization is merely feeling this immaculate presence here and now, realizing or being fully cognizant of the ordinary miracle of just being. This needs no attainment since it is already occurrimg. It requires no special circumstances, no life epiphanies, no meritorious preparations. It is fully present each moment of our lives. It stays fresh and innocent despite our sorrows, regrets, and whatever damages or failures we feel we have sustained. No suffering or transgressions have marred it, just as no exalted deeds have enhanced it. Countless thoughts and experiences have come and gone, and none of them have adhered.

Id. at xix.

As soon as I wrote these words I recalled that I needed to do something with the countless rolls of toilet paper in my home. A friend is in town. This evening, Roberta and her friend will come to visit me. I am not up to doing as much cleaning as I would like, but, back in December, I called Peapod and ordered some items to help me get through those last weeks of treatment. I intended to order some toilet paper, but somehow had delivered about 240 rolls of toilet paper. I kept them because, at the time, my problem was that I had a problem with elimination. Fluids ran out of me freely all day long, sometimes every ten minutes. Now my problem is that everything that comes out of me comes out painfully, about every hour. When the naturapath asked me about acupuncture, I told her that I had it once. It was painful. The doctor said that he had never seen a more toxic person. Is this the realization I’ve been searching for? It takes a lot of toilet paper to clear out major toxicity. Already I have stuffed several packages of toilet paper into the front hall closet. The rest sits out as a reminder that I ordered too much of it. I am going to get up from my chair in a minute and stuff the remaining packages of Angel Soft toilet paper in the front hall closet. I believe there is also a huge package of Bounty paper towels there as well. If there is a message in this abundance of toilet paper, perhaps I have just come to realize it. I am going to reflect on Alice’s musical prayer, the acupuncture doctor’s diagnosis, the body’s suffering, and my wealth of toilet paper and paper towels, and see if I cannot come up with a prescription for making peace, rather than war, with my body.

Universe, hear my friends’ prayers and music. Help me find peace with my body and my life. Universe, I am listening.

The Urologist Has Spoken

As many of you know, one of my chief physical complaints following radiation and chemotherapy has been the painfulness of my bladder. The radiation has caused it to bleed, sometimes with large clots that are painful to pass. There is pain the many times a day that I eliminate–not a twinge or a twang. This is pain that makes me bite my lips and shudder to keep from crying out, often without success.

I recently underwent a procedure during which a urologist inserted a camera into the bladder and looked around. Then he filled the bladder with water, which water he withdrew for testing. The test revealed no abnormalities consistent with finding cancer there.

I have been trying to speak with the urologist ever since he left me a message to that effect. I wanted to know when I could expect the pain to abate. I continued to bleed and wondered when I could expect the bleeding to stop.

We finally spoke this morning and the news was not happy.

I have what I now understand to be a permanent condition called radiation cystitis. In layman’s terms, the bladder has been fried. In time, pain may abate for periods of time. However, it can and, more likely than not, will return. Pain and bleeding are commonplace. My pain management options–the orange pills that I found made my condition impossibly more painful in December or the astonishingly expensive and unhelpful Vesicare that we tried in January or the always recommended ibuprofen–are the treatments. That orange medicine was a pernicious little “poison.” When the pharmacist saw that I was to take it for a month, he was stunned. Perhaps not familiar with cancer treatment, he said the drug usually was not administered for more than a couple of days. The Vesicare’s sticker price caused sticker shock. The ibuprofen is not suited to addressing episodic pain.

There is a 60% chance of reducing bleeding if I take about 30 treatments in a hyperbaric chamber. No such chamber is available at my hospital, and I would have to pay for it myself. It would not address pain. (Paul has made the very gallant offer to help me pay for that treatment if I want it. Dear Lord, thank you for the friends you have sent me. I do not intend to accept his offer, but I am moved deeply by his impulse and his caring.) There is a 30% chance of some improvement if some formations in the bladder are “shaved” off during an invasive procedure some find painful, which would not be offered at this stage in my recovery even if I fancied another invasive procedure, which I do not.

Live with it, is the best advice for now.

I inquired as to whether internal radiation, which I currently am resisting, could make this worse. The radiation oncologist would have to answer that question and dosing could affect his judgment. The urologist could only speculate that the frying (my word choice) has been so thorough that it might make no difference at all. I see the oncologist, Dr. H, on February 27th. I have not gone to see the radiation oncologist since his department sent me to the ER in late December. That is the doctor who used hand gestures to explain the consequences of radiation. When I looked confused at his pointing to his crotch and hips, he explained he was not used to patients with my level of education.

I will be discussing this with my naturapath first. Rather than do nothing, I would like to think that I might find some way to manage my pain, short of daily medication, if not cure my condition. This was not happy news, but, as my doctors so frequently maintain, the alternative to action is cancer. That argument has induced me to do many things that may yet prevent a return of cancer. With time has come much wisdom. I think daily of the statement my father used (comedically) when we whined as kids: “Come over here, and I’ll give you something to cry about!”

Who seeks a steaming hot mustard plaster to address a bad cold any longer? How about a good bloodletting to address anemia? The field of medicine has come far, but, at its edges, it remains a field like world exploration before the discovery of the Americas. You set sail with hope and courage, but, in the back of your mind, there is a possibility that the world will prove flat and you will neither arrive at your intended destination nor return home. We set sail anyway, don’t we?

The nature of man can be to risk all to succeed. I pray that I have done so and not undergone so much pain and injury for naught. Speaking of prayers, anyone so inclined is welcome to pray for the abatement of pain. I already have begun yet another entreaty for spiritual intervention. So far, God has heard your many prayers and helped me through some very tough times. I pray now for the strength to “take” the medicine I asked for and doctors prescribed.

A Woman’s Dilemma: What to Do about My Hair?

My hair has been a trooper. The oncologists predicted I would be bald in week three of chemotherapy. I am not bald yet and this is the third month since I began chemotherapy. My last chemotherapy session was December 21st. I still have hair. I can work with that.

The hair on my lower torso was quick to jump ship. Two lone hairs remained on one leg until this month. My underarms were bare soon afterward. Even the five or six tiny hairs that once grew on the tops of my big toes have been gone for a long time. I can work with that.

Those pesky hairs on the upper lip and chin disappeared–except the white ones that can grow too long. They hung on for much longer, contributing to my feeling that cancer aged me. I shaved them off.

Then came the arm hairs. One morning I washed in the shower and noted their persistence. I was alarmed that night to see that every last one of them was gone in the same day.

In recent weeks I have noticed that I am down to a few eyelashes. I can work with that. I use an eyebrow pencil to fill in bald patches in my eyebrows.

My hair on my head has thinned very gradually. There were no bald patches. I can work with that. I washed it once a week no matter how much I longed to keep it cleaner. I fed it vitamins and selenium. I combed it gently once a day. I ignored the widening part on my left side and in the back–symbols of the more substantial “parting” to come. I watched as the gray hairs fell first, a phenomenon that I thought of as “God’s gentle touch-up.”

At one point I cut an inch off of my bob because the ends looked scraggly. This week I cut my hair to about one inch, a little longer on the right side of my part. It’s not an attractive cut. When I awaken, my hair is standing up and I look like I have survived a bout with cancer or like my hairdresser lacks a license (I do not have a license to cut hair).

I first tried the red wig. My hair is dishwater blonde, sometimes light brown. It has not been color treated since August. In my home, under gentle lighting, I loved the fire. I recently heard that red heads get more sex than blondes, challenging the notion that blondes have more fun. I am not interested in their fun, but their bold coloring seemed so much more encouraging than any familiar hair color. I longed to display that spirit as I faced my life’s most serious challenge to date (cancer, not hair loss). It is a Raquel Welch wig. I like the way it is made. It fits fine. The style is sassy. My hair is straight and fine. This wig has waves and looks tossed by a gentle breeze. This is the most fun that I have had since my cancer diagnosis. I feel brave in it. I look different.

When I got to school on Thursday night and saw it under the bathroom’s stark white bulbs, I thought of Lucille Ball and was worried. I resolved to enjoy it anyway. I never chose it to resemble me. I chose it because I am changing and, after months of feeling like a caterpillar with tufts of hair (gray, then blonde, then brown), I longed for some of the butterfly’s beauty, even if I had to borrow it.

Students were kind. I think most people are kind. One fellow cancer survivor even told me about a procedure by which eyelashes are attached to the eyelid even if you have no lashes of your own. I won’t be pursuing that procedure, but it is good to know that there are ways to handle losses any individual finds hard to bear.

I tried the blonde wig with red highlights on Friday. It is an asymmetrical bob. On one side the hair comes down in a long curl a la Nicki Minaj. The long curl is too much for everyday wear. I want to clip it off, but wore it anyway because a bold bird preens over its colorful feathers. This wig never quite sat correctly on my head. It rode up in the back, producing that conehead effect some wigs have. The long curl tickled my chin like Rip Van Winkle’s beard. My law students urged me not to clip it. One students suggested a color like pink. Candy colors are so cheerful.

As soon as I returned to my car, I dragged off the wig and ignored my own misgivings about the remnants of my hair. Hair is not much different than clothing after a couple of days spent in a wig. My hair is comfortable, like sweat pants or pajamas. It does not matter to me that it looks so foreign. It is still my hair. Moreover, as my hair has fallen out, I have had an opportunity to pluck so many of its strands from coats, sweaters, blouses, and pillows, that I feel like I have said goodbye to it more than a thousand times. I am long, long, long past crying as we bid each other farewell.

What remains is like me, I guess. It is stubborn. It stays even when it is no longer welcome. I may cut it down to size, but cannot “bare” to shave it off. The truth is that, while my hair is not the important loss it is for many other women, it is me, too. It remains welcome even as I shed parts of me that I no longer want (cancer) or need (chin hairs).

I would not be honest if I did not admit that I tied on a wool neck scarf before picking up a sandwich at a drive-thru on my way home. The scarf reminded me of a babushka (a friend said that term is out-of-date, I should call it a do-rag). It was better than the sight of my hair, which shot up in a million, make that a thousand, make that a dozen, oh, maybe just five directions. Change can be difficult. I have changed in many ways that have caused more tears than this change.

Like the other changes, I intend to handle this one with courage and a little smile. Smile with me and it will be fine. As I said before, I think most people are kind. I can work with that.

Smelling Funny, Like a Bad Papaya

Yesterday I listened to my local public radio station and heard an explanation of why, as written in my previous post Baby Steps, I might now smell bad to myself.

An author answered questions about her recent book (my apologies, I missed her name or book title as I joined the interview after it began). A caller asked why his wife and daughter loved the smell of Mexican papaya while he hated the smell. He reported that he had read somewhere that many others hated the smell, too.

The author responded that smells were perceived based on the differences between our life experiences with the thing smelled and age or sensitivity. If I have had a bad experience eating papaya, then I may never again care for the smell of it. Alternatively, I may have more sensitive receptors of a particular scent, which may affect my perception of a smell as good or bad. Over time, the receptors in each of us are likely to dull. The author speculated that this was not merely a phenomenon relating to smell.

In the case of dulled receptors, she speculated that one’s receptors might lose strength over time because, as we age, we lose interest in rejecting smells and become indifferent to them. She likened this to weakening as we approach death. We may fight a thing when young and give up the battle as we age. She offered one caveat. If a person faces repeated exposure to something unpleasant, then, over the course of a lifetime or a career, one’s distatste could grow.

As an example, a police officer who investigates deaths might grow more disgusted by the smell of death (or sight of it) over a career.

Her other comment was that we become accepting of a disgusting odor if it is in the family. Thus, I might gag while changing a baby’s diaper but find the diapers of a family member tolerable. Another caller from the health industry said that, in her experience, there were people who drew the line at mouth care, upper body smells, lower body smells, but seldom all of them. The author allowed that an individual could be more sensitive to some smells than others even if exposed to them constantly.

One possible interpretation of the foregoing is that the author reports on a field for which no reliable data exists. Why else might one offer so many conflicting explanations for the phenomenon?

I prefer the first explanation. I dislike the way I smell today because I attribute the change to physical changes when the changes are the unhappy results of my disliking the physical changes made to my body by radiation and chemotherapy. I really would not care to think that I smell badly and always will.

I would not care to think that I will perceive myself as smelling worse as I grow older. If one dislikes the smell of papaya, there must be nothing worse than an old papaya. It might be a comfort to think that older men will find me more appealing, except that I hate the thought that anyone would stand upwind of me to avoid gagging until he grew to like me.

No one currently has as his or her job the regular exposure to me. However, it would be interesting to determine whether those who dislike me also dislike my smell. It sounds like a natural defense against a predator–like a skunk’s musky odor released in times of danger. What might my new odor repel? I would like to know.

Of course I am comforted by the thought that family and friends will find me acceptable no matter how rank my odor because of their familiarity with me. I would like to think that anyone who loves me will find me tolerable even if I have changed in respects that I could not control. They already put up with many of my least attractive characteristics. As the author intimated that other senses are subject to similar perception, this would suggest that familiarity breeds tolerance, rather than contempt. I am reminded of when my father’s mother was in a nursing home. My aunt and I, along with a caregiver I hired, took certain nights to visit Grandma K at dinner time. Before we left, we helped Grandma into a nightgown and tucked her into bed. She did not like to sit in her wheelchair before a TV in a public area. She wanted her dinner, her nightie, a Meltaway Mint, her own TV, and a hug or kiss.

On many occasions, I wiped my grandma’s bottom after helping her to and from the commode. She was uncomfortable with this because she hated the thought of imposing on me–until I told her that it was my honor to wipe the royal bottom. She laughed. I know she understood that I loved her so much that nothing about her could disgust me. Nevertheless, there was a day in August, just prior to her October death, when she threw up in my lap. I saw the look on her face. She was mortified. I was not disgusted. But she lost her will to live in the weeks following that event. I started to visit every day, trying to encourage her to live. Each day she grew weaker until she ceased to communicate. I kept visiting. I saw her the night before she died and, even then, she was dear to me in ways I cannot explain–in ways I need not explain to anyone who has watched a loved one die. There really must be something to that notion that treasured family and friends are always dear. Even if I cannot accept the changes in me because of their negative associations with cancer treatment, I hope that those who matter most will always love me (and pretty much everything about me) like I loved my grandma.

I would like to think that, as time passes, I will love myself enough to lose my own distaste for the new me.

That is, perhaps, the greatest gift accorded by a loved one–tolerance of one’s loved ones even if they begin to smell like a bad papaya.

Baby Steps

I continue to suffer the side-effects of the efforts I have made to prevent the return of cancer.

I cry in bathrooms. It still hurts to eliminate anything. I have no idea if this is a temporary or long-term problem. One woman asked me if I needed toilet paper. I hope I never cry for lack of toilet paper. I have tried to lighten the dismal mood that I am in when in a bathroom by crying, “AyAyAyAy.” Sort of a tribute to jalapeno peppers everywhere.

I can barely walk up the four steps to my apartment–particularly when weighed down with a cart of books and papers to grade. Tonight it took me about four minutes to make the climb. Sixty seconds is a long wait to climb one step.

I have trouble sleeping. If I sleep 46 minutes to one hour without waking, I am happy. I have a few times slept two hours in a row. How refreshing!

Foods taste differently to me. Today I ate a bratwurst. I had cooked two. One ended up in the trash. Diet Dr. Pepper used to be an occasional treat–no more. It tastes terrible to me.

I don’t smell the same to me. My sweat smells differently than it did in the past. Other sources of body odors also have changed. I personally find the new odors distasteful.

After surgery I was numb around my incision. Before chemotherapy and radiation, sesnsation had returned. Now it is gone on my left side and restored only on the right side. I feel as if there is a gaping tear there–not painful, just disconnected.

My hair is neither here nor there. Some remains on my head. The rest is on my clothes, my pillow, my comb, the floor, caught in my necklace, and sometimes snagged on my lip. I fear it will all fall out before it grows in anywhere. I have eyelashes and eyebrows (update: by February 8th, they also were becoming scarce). There are two hairs on one calf. I have a few white hairs that have grown on my chin. The rest is gone.

My nose still bleeds every day.

My skin is so dry that I have calluses on my knuckles and the joints of my fingers. There are patches of very dry skin all over my ankles.

My gums bleed if I brush hard or floss.

I feel as if I am a much older person than I was two months ago.

Inside I am positive. I enjoy many things in life as much as I ever did. I believe I have beat cancer. I remain passionate about teaching and about writing and about people and about so many things that have always made me happy. Nevertheless, I sense that I will be viewed by some as damaged. That saddens me.

On the day I started chemotherapy and radiation I brought two fortune cookies to the session. Barb took one. Mine, which hangs over my desk reads: “You will pass a difficult test that will make you happier. Lucky # 10, 17, 25, 29, 32, 37.” I pray that the fortune is correct. For now, I take baby steps. I pray that I will pass this test and, indeed, be happier.

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